Newly Diagnosed and scared

Hi, i was just diagnosed after having some symptoms for a while. The dr. who told me just was so matter of fact, had no bedside manner. Gave me some meds and a printout on parkinson's that i believe is several years old. I need to9 find a new neurologist, I had the datscan. Is thats always accurate? Right now i feel like i am walking on a boat. I'm ok if I am sitting. I am female 58.

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  • It is always a shock when you are initially diagnosed. I was 49yrs old when I was told, very much in the same way as yourself. It is very difficult for friends/family to deal with also. The people on this site are all in your boat, so they can empathise completely. Stay as positive as you can, we are here to help.

  • Thank you. Right now i don't know what to expect. I've been shaky in the hands my whole life when i would get nervous. My hands aren't bad but when i walk i feel weird, like i am swaying but no one can tell. Almost like i'm walking on a boat. Have you ever felt like that?

  • Yes, I felt dizzy and confused. I think that is the shock factor, not Parkinson's.

  • Welcome dmariel. walking on a boat is excellent description of our challenge.

  • My legs feel really weird. How long have you had?

  • I have been diagnosed 11yrs, I was 49yrs old.

  • Hi dmariel

    Keep your chin up. I believe the sooner you accept the diagnosis the better. The advice on this website has been invaluable. Where do you live in the U.S.? Try to find a Movement Disorder Specialist in your area. They specialize in PD and are more understanding. I was diagnosed 13 yrs ago at the age of 46 and I am still doing fairly well for the most part. Two things that help me are lots of antioxidants and exercise. I've been going to Rock Steady Boxing for 10 yrs. and I can't say enough about it. It's non-contact boxing and strictly for people with Parkinson's (PwP's). Check it out sometime and see if there is one close by. rocksteadyboxing.org. My testimonial is under Debbie. I have a purple shirt on. Also, research, research, research. Try Michael J Fox's site or others. I like this site because of the real life experiences. Ask any question(s) and you'll get answers. Take care & keep fighting!

  • Hi what antioxidants do you take pls?

  • I take broccoli, blueberries, cranberries, pecan's, avacado etc.

  • kidney beans...

  • check out chia seeds, lots of other foods, these are particularly rich....google it.

  • munchybunch I take Emergen C. It has vit C, B vitamins, magnesium & electrolytes. I also try to eat berries, avocados, kale, spinach, cherries, dark chocolate, bell peppers, tomatoes, coconut oil, walnuts & almonds. I also take Protandim which has Turmeric, Milk Thistle & 2 or 3 herbs. I also take Krill oil & vit D3. I don't always eat all those foods but I feel better when I do. I like pizza & steak too much! Oh, I also TRY to drink a lot of water.

  • Thanks for the help. Do you think the supplements make the difference or the exercise?

  • The exercise makes the biggest difference in the symptoms. The supplements & eating right make me feel better but exercise makes me move better and PD is a movement disorder so if I had to chose it definitely would be exercise. Just make sure you push yourself when you're working out. Everyone is different but that's what works for me.

  • laglag wish we had rocksteady boxing here in the UK

  • Look up something called PD Warrior. I believe it's the same concept but a little different. I understand it's a good program also. I'll also check with Rock Steady (RSB) headquarters here in Indy & see if anything is in the works for one in the UK. I've been with RSB for 10 yrs (2 mths from the beginning) & I love it! There are currently 327 affiliates around the world. Good luck! You might check with your local gyms & tell them about RSB & see if they would be interested in starting one. There have been a couple of folks on this site that have done that.

  • Thanks laglag that's good advice indeed. We contacted PD Warrior here in the south of England but we're told by email that my husband was not a good candidate as he's had PD for 11 years (now 62), suffers from fatigue and cannot stand up for long periods of time 😞

  • See if there are any other exercise programs for PD that are reasonable for you to get to. There is LSVT BIG, Dance for Parkinson's (which can be done in a chair on days when standing doesn't work), and chair Yoga. No matter the number of years since diagnosis, if your husband can do some exercise at least every other day if not daily, it can make a significant difference in how he feels and over time likely a considerable difference in his symptoms. Have patience.

    Is there a qualified physical therapist that you can get to work with him at your home?

    If all else fails, you can find lots of short examples of PD programs on UTube or CDs that can be done mostly sitting or holding onto a chair. These you might need to do with him. Start with what he has energy for. Five or then minutes is better than nothing. You may be surprised how much he improves over just a few months.

    One of my husband and my favorites affirmations is NEVER GIVE UP when challenges come along.

  • Thank you for you encouraging advice answerseeker. He does go to a 60 min Parkinson's Pilates class once a week, he also does Qigong 2 or 3 times a week for 20mins and occasionally manages an 11min unaided walk (UK weather permitting!) But I feel he could do more so I'm investigating what's available that he would enjoy and from which he would gain most benefit.

    LVST Big is not available here and dance would not be for my hubby unfortunately as I think that would be of great benefit to him.

    A 1:1 with a physical therapist at home would be great but too costly I'm afraid.

    I'll keep looking to see what I can find in our area.

  • GlenandGerry,

    Sounds like he is already doing a fair amount though I do get always looking for something more that he would enjoy well enough to do. I am in the same place with my hubby. He is 13 1/2 years in and still working 30 hours a week at the age of 80. With the time it takes him to get everything done, it is a challenge to fit in many extras during the week.

    The best thing he has going is a Warrior attitude and a lot of self discipline to make sure he does what needs to be done as much as he can. We also just like to have fun, laugh, sing and lately have been dancing at home more. Even with a lot of progression of symptoms over the years, he still thinks of himself as a healthy person with a little PD.

  • Glen and Gerry, wow thats impressive what a fun loving couple. I want to hang out with yountwo.

  • i'm pd scout.....lol, at this point I should do whatever is good for mitochondria....recently I read something to the effect I should be taking lipid AND soluable antioxidents.

  • I cannot find rock steady in south of England. But my gyml trainer has devised a boxing programme for me instead (alongside rowing, weights and balance exercises). Similarly there is no local PD Warrior. I did travel to see a PD Warrior instructor but was not all al happy with the session. The boxing, as well as being great fun, works well with the rest of my training. I also take a NIA class and two Pilates classes. Pilates works wonders. My diet is really hit and miss but I stick like glue to my 5 hours of exercise each week.

  • Thanks Jeansm. We contacted PD Warrior and we're told by email that my husband was not a suitable candidate. I will have to make enquiries to local gyms/trainers to see if I can instigate some type of boxing program for PWP. My husband attends a special Pilates class once a week for people with various health problems, several of whom have PD, but he needs to do more. What is NIA and where is your gym trainer? Thanks.

  • This is link to NIA site nianow.com

    The trainer I use is attached to my local gym, but I would think most trainers who have any experience of boxercise type boxing could work with you to put a programme together.

  • Jeansm and glenandgerry

    Great job on putting your thoughts together. Until u mentioned it, I forgot that PD Warrior wouldn't take people that were further along with their PD. Finding someone to work with you on boxing is great. The big movements and the intense nature are what helps. Suggest your instructor go to rocksteadyboxing.org and check it out. It might give them a few ideas, especially from the videos, and they might be able to attract more PwP's which is a benefit to have others working out with you that understand how you're feeling. Also, look up. Don_oregon_duck 's profile. He was successful in taking a local gym in his state into opening an RSB. He gives some suggestions on how he accomplished it.

  • Hi Laglag, since there is no Rock Steady in the south of England I did manage to get my trainer interested in looking at a franchise (and the videos etc), but it was expensive and I believe trainers also have to travel to the USA for coaching. I live in a rural village with very small gym so it's just not a cost effective option for them to open a class. Personally I am enjoying exercise in a none PD environment. It makes me feel like a "normal" person, but on the downside, one to one training is costly. I have found my social support through being a member of Parkinson UK. I took one of their 6 week self management courses (highly recommend) and all attendees who completed the course still meet up regularly at a local pub. We also have a Parkinson's UK district club that meets monthly and arranges talks for the newly diagnosed 4 times a year.

  • Thanks for this Jeansm I don't know about the Parkinson's UK 6 week self management course......Will look it up on their website. Which part of the UK are you in?

  • parkinsons.org.uk/content/s...

    I believe they run courses nationwide as needed.

  • The BBC also showed an interesting documentary featuring "Dance for Parkinson's" based on ballet, but it is only available in Oxford, Liverpool, Ipswich, Cardiff and London.

  • Thanks for the info and web links laglag very useful. Rock Steady Boxing definitely ticks all the boxes. Will just have to see what I can find locally which is a close alternative 😊

  • Me again dmariel. I meant...as soon as you "accept" the diagnosis..

  • I knew what you meant

  • Hi, dmariel! Laglag and Andrewj speak the truth here. My name is Lynnie and my guy was officially diagnosed about a year ago, but we suspect he's had it for years. It's very dismaying, but do the research and reach out to others as you are doing. Ron has a doc similar to yours, we have to find another one as well.

    But if you can find ANY Parkinson's classes near you, please go! They can turn your life around, and you will find so many wonderful people who will quickly become your friends. Like Andrewj said, we're all in the same boat. Wish I knew where you lived! Ron and I found a class at our local YMCA and it evolved into a Rock Steady Boxing group! Laglag, it's been remarkable, he looks forward to it, and we have a Reflex bag at his house for practice and focus.

    Please do not lose hope, find a neurologist who cares, but meanwhile, investigate every website you can, online. YOU ARE NOT ALONE! 🤗

  • Thank you for the nice note.

  • I live in Michigan

  • There are several Pedaling for Parkinson's programs in Michigan. Either Google Pedaling for Parkinson's or ask and I'll send you a list. It would help to know where in Michigan you live.

  • I am in clinton township

  • Darn it. I don't see any PFP programs near you. They are in Adrian, Ann Arbor, Grand Haven, Grand Rapids, Holland, Jackson, Marquette and Muskegon. In spite of the fact that there is no PFP program near you, you can still ride by yourself, which is what I generally do. I put my bike on a trainer and lower the resistance until I can pedal at 80-90 rpms, then ride for an hour. The program calls for riding in this way 3 times/week, but I generally average 5/week. Let me know if I can be of any further help.

  • Lynnie1I received an email with your name asking about dosages on antioxidants but I can't find it on this thread? Anyway, I listed some supplements & some foods earlier on this thread & dosages for Krill oil is 500 mg & for Vit D3 I take 2,000 mg. per day. Emergen C has 1,000 mg of C.

  • laglag Thanks for responding! I saw your post with the info right after I posted so I deleted it. Ron is very resistant to most fruits and veggies, so I'm trying supplements with him. He's just so stubborn!

  • I had the same experience with my first neurologist. Most of his patients were MS patients. My new doctor sees ONLY PD patients, is very approachable and advocates diet and exercise. The positive difference in treatment and regimen has been amazing.

  • pedserv wow, you were so lucky to find a new Dr with an open minded attitude.....that us rare indeed but very fortunate for you! Here in the south of England not one of the healthcare professionals we've spoken to have mentioned diet and/or exercise.

  • Would be very interested to hear what sort of diet your doctor recommends. My husband finds that any protein in the evening makes the twitch in either leg worse

  • Any special recommendations pls re diet and exercise. ? Our neuro just gave my husband the meds and that was it!

  • Do yourself a favor and get tested for LYME. not with the western blot- frequently falsely negative.

  • I did have the DaT scan. Should I still be tested for lyme? Thank you.

  • I'm not too familiar with the different scans. I would still have a definitive blood test for lyme such as igenex or dbs labs.

    Lyme is frequently misdiagnosed. Some treatments for lyme include hyperthermia, rife machines, cat's claw, IV vit C, IV ozone....

    My mom has had PD for 15 years, spent 12 on sinemet and went off from it this july 2016 and started taking macuna per dr. hinz protocol. we have seen a SLIGHT( not what we were hoping for) improvement in mobility but are happy to see her off carbidopa which binds to B6 in a 1:1 ratio --a reason anxiety, depression, insomnia, incontinence, etc are side effects. If I had PD I would NOT go on this drug...it initially helped my mom a lot in circa 2005 when she started, but the side effect list is endless and REAL.

    She never was an anxious person pre-sinemet...but turned into a nervous wreck in a couple of years. She was prescribed Ativan for anxiety every 4 hours as needed...and ended up taking it around the clock, became addicted and had to be hospitalized to wean off from it...similar to going through alcohol withdrawal. I want her to use cannabis, but we haven't tried yet, there are some crazy youtube videos with Parkinson's patients results with it though..

    I would also see a chelation Dr. and determine whether you have metal toxicity. My mom had toxic levels of mercury, cadmium, arsenic, lead, aluminum and tin. She has been chelating for about 60 treatments and some of her levels are down but we have a long way to go. It's a weekly IV treatment, kidney function needs to be monitored because it is nephrotoxic, but she has had no issues. The mercury level coming down decreased her tremors and improved her mobility but we're not as happy with other neuro results as we'd like to be --anxiety, depression, OCD, brain fog, confusion, insomnia...so the search continued.

    Last week she tested positive for Lyme, I'm still amidst researching and I actually just joined this site yesterday to connect with other PD patients with Lyme and know the efficacy of treatments.

    The other thing I've been reading about today is B1 injections...there is a theory that PD is thiamine deficiency..there was a study published in Italy recently about this.

    In my opinion....parkinsons is: metal toxicity, lyme, nutritional deficiency, stress or a combination...my mom just so happened to have all and it has been a LONG struggle to pinpoint that. We see two holistic health practitioners --one for macuna, one for chelation. She has a primary that we don't really see, and we quit her neurologist.

    Parkinson's is poorly understood in the medical community and offers little hope. The approach is that it's a chronic incurable neurodegenerative disease and the plan is to "start low, go slow" on sinemet whilst the patient has little to hope for or look forward to. Do yourself a favor and be your own dr. and advocate because the medical community's answer for everything is to prescribe a pill to counter a symptom. they don't treat causes, and they don't help people with parkinsons.

  • Hi jwals Thanks for the interesting note. I will be tested for lyme disease. I was immediately put on siminet and don't have a lot of symptoms so i don't know if i wanna take it. I was reading that tumeric is good for parkinson's. I drink in the morning or when i can with hot water and some lemon, it doesn't taste real great but it's worth the try. I have tried marijuana when i have done that its feels like i am walking funny, feel like i am swaying but i'm not, no one would notice. Take care and good luck to your Mom. Donna

  • The Dr. Hinz that the previous poster referred to is alone in his opinions - I have not seen any independent research that confirms what he claims. I have been taking Sinemet for over 2 years and do not have any of the symptoms he listed above, except the insomnia which started before the Sinemet. One important thing to know about Sinemet is the controlled release ("CR") version is vastly better than the immediate release, so insist on the CR version.

  • Thanks, this whole thing has me really freaked out is all i know.

  • Think of it as an oddball medical adventure of learning all the different ways dopamine is important to your nervous system.

    Oh, and stay away from household insecticides - especially anything containing permethrin.

  • thank you!

  • Our doctor, Neeta Patel, moved to Ann Arbor last year to be close to family. She is a neuro movement specialist. If Ann Arbor is near you, you might try her out. My husband (my person with parkinsons) and I both loved her and miss her in Texas. She was a member of the team of Neuros at the well respected Univ of Tex Health Science Center in Dallas dept of Movement Disorders.

    She is very caring and will take time with you.

    Learn all you can and be your own advocate. After Dr Patel left, we had to find an new neuro. He and his team (of doctors training in movement disorders) tried to diagnosis my hubby with MSA. A really devastating diagnosis. I had to challenge the group and they rescinded the diagnosis. Since he did listen to me, we are waiting to see if we will be happy with this doctor over time. Getting into a good movement specialist means waiting for months to finally see them.

    Finding a good doctor is very important.

    Fortunately for us my husbands parkinsons is advancing very slowly.

    I wish you the best.

  • Thank you. I am sorry that your dr. moved. Ann Arbor is pretty far away from me unfortunately. I will look her up to see how far. Wishing you and your husband the best.

  • jwalz your mother is lucky to have you, especially doing so much research....it takes up such a lot of time and can at times be very frustrating. I'm doing very similar things as you for my husband who was diagnosed with Parkinson's in 2005 at the age of 51. He's still taking Sinemet 3 times a day but it's a long struggle to get to the root of the problem. We're still working on it! We're just in the the throes of consulting with two holistic health practitioners as well and my husband is looking the best I've seen in a long while at the moment. Getting him to understand the importance of diet and exercise is sometimes a struggle though! 😊

  • glenandgerry It sure is a lot of information to try to make sense of! We were very unhappy with all of the side effects of sinemet. Where are you located? have to you tried lyme treatment or chelation? we are JUST starting to look into lyme --but there is a STRONG correlation with both lyme and mercury toxicity to parkinsons. The Hinz protocol is NOT a cure, and the ultimate goal is to be off from it. But Carbidopa is just not an option anymore in our mind after understanding it's mechanism of action. So many things that my mom struggles with (and "symptoms" of the disease) did not exist prior to her taking sinemet. It's obviously a personal preference, but those dyskenesias --pill rolling, tongue rolling, etc. went away when going off from carbidopa. as well as vivid dreams, hollering in sleep, or the "wooo-wooo-wooo-wooo" that is also characteristic of Parkinsons--actually a carbidopa side effect. Anxiety is still bad, but improved, that's what we're working on most, that and confusion --which I contribute to lyme because of the neuro effects associated with it. we're trying to talk her into cannabis oil...but it hasn't worked yet;)

  • jwalz we're in the UK and also just started to look into Lyme Disease as my husband was treated for tick bite fever many years ago when we lived in Africa. Did you read silvestrov's reply to the post a couple of days ago by someone ( can't remember the name) who has PD but has now been confirmed as having Lyme. Silvestrov gave lots of information & web links which were very useful.

    We are aware of the terrible side effects of Carbidopa but unfortunately my husband can't even stand up without taking Sinemet. Although he only takes 1 tablet 3 times a day + extended release at night to allow him to turn in bed.

    He would love to give cannabis oil a try but it's too risky over here as it's not legal!

  • No, unfortunately haven't seen that post but will try to look for it now.

    We are looking into doing IV ozone treatments, cat's claw and Rife therapy. We decided not to go with antibiotics because the are so hard on the gut flora and we don't want to disrupt it when we've been working hard to build it up with probiotics. There is some research showing how beneficial healthy gut flora is with neurodegenerative disease. My mom had a blood test that showed 5 of 12 positive antigens for Lyme and co-infections. Nice to have a direction to go, but a pretty discouraging diagnosis after nearly 15 years of searching.

    The chelation/ metal toxicity is something I cannot recommend strongly enough, really improved mobility, decreased incontinence episodes. I think without it, she would not have been comfortable going off sinemet. I know what you mean about not standing--she was being assisted on/off the toilet, using a raised toilet seat, walker, getting dressed/undressed by others, helped in/out of bed. total care at age 62. After 60 treatments of IV chelation, her mercury level is down from 29ug/L to 6ug/L (anything over 3 is considered an unsafe level, and severe mercury toxicity) she is still receiving weekly or bi-weekly treatments.

  • jwalz here is the link to the post from Dpeachy with all the useful information on Lyme and web links from silvestrov (in case you couldn't find it yesterday) healthunlocked.com/parkinso...

    So much to consider (especially adding chelation/metal toxicity into the mix) I hardly know where to start!

    Btw whereabouts are you and your mother?

  • We are in Wisconsin, USA.

  • I'm female also diagnosed pretty much like yourself and at 58. I was in shock and denial for at least 6 months even though my DatScan showed dopamine depletion. I immersed myself into researching as much about the disease as I could and realised that over the years I had had many typical PD symptoms that had gone unrecognised or attributed to other problems. I then researched "treatments " including drugs to help with symptoms, alternative therapies and exercise. Fully informed I then saw a different neurologist and together decided to take Sinemet. This plus 5 hours of exercise per week means I feel better now (16 months after diagnosis) than I have done in years.

  • I am glad to hear that you feel better. I don't know what to expect. I have been reading anything i can find. Now if i feel weird i blame on the pd but I don't know if it's that or not. I am going to find a new dr. but am going to go back for my followup visit just to see for sure if the dr is really that much of a jerk. If so, i am going to call him out on his bedside manner and then find a new dr.

  • I too can report that it turned out I was having symtpms of PD for years and thought is was "nerves" or tension. I felt much better after starting Sinemet CR.

  • Myself I thought I had ALS, so getting a Parkinson's diagnosis was a relief. Where I worked there was a lady that had ALS and some of the symptoms over lapped with her symptoms.

  • i wonder how drs. diagnose ALS

  • I think it is a clinical diagnosis like Parkinson's, and it progresses swiftly as far as I know

  • Yes, sounds horrible indeed.

  • It is a horrible disease. My friend had PD AND ALS. She just passed in November. Last April of 2015 we went to Vegas & had a wonderful time & now she's gone. It hit her fast & hard. If I remember correctly, there was something in a brain scan that may have led them to the diagnosis or it could have just been the symptoms, put i feeding tube because she couldn't swallow, couldn't understand her speech, couldn't keep her head lifted, couldn't walk. Once it started it didn't stop. Made me thankful I only have PD (and breast cancer).

  • Welcome, you came to a group of supportive folks. My neuro is a good man, but I received the same sad look, a book which talked about caregiving needs, and I promptly tossed it into a drawer and hit the gym. I can't emphasize enough that exercise is critical! What is fun will be more likely to be sustained but all movement is important. Everyone is different. You may not see a significant progression of symptoms for many years. I think that staying positive makes a huge difference.

  • Thanks for the note! I am wondering about my legs, they feel weird when I walk as though i am swaying. Have you ever experienced this? I'm worried about not being able to walk...

  • You and your neuro, whoever you end up with, may have to experiment with meds and dosages. I highly recommend exercises that help with balance, especially classes in qigong or tai chi. Being with others on a regular basis you will make friends and have fun. I am fortunate to belong to a gym that focuses on the needs of older adults, 55 plus. Many non parties also have balance issues.

  • Yes, i was thinking of joining a gym as well. I just don;'t know what to expect? How long have you had pd?

  • Diagnosed about two years ago but had tremor in one hand for several years before that and lost most sense of smell ten years before. Check out several gyms in your area. I like the YMCA or those run by non profits better than corporate ones. However, all tend to have older members using the facilities weekday mornings. You need to feel comfortable and the staff should be welcoming and available as needed.

  • Hi Lionore and dmariel, my PWP and I joined the YMCA and took the Senior yoga classes until the Parkinson's classes started. The yoga classes are chair yoga, so you always have a chair for balance. It's a complex disease, different for each person, which makes it so difficult to treat. My partner has found that exercise and stretching have been a huge help. He takes Sinemet, and a couple of antioxidants. But it's trial and error, that's why this community is so necessary. We all help each other. Hugs to you both!

  • Hello

    I see you have met some interesting people already.

    I just want to be sure you understand. I have never observed that any one posting here claimed to be a professional in health care and just because several people agree on something here does not make them correct, nor the information valid. Be careful what you do based on information gleaned from the internet.

    This web site is not designed to, and does not, provide professional medical advice. All content including text, graphics, images and information available on or through this web site are suitable for general informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Never disregard professional medical advice, or delay in seeking it, because of something you have read on this web site. Never rely on information on this web site in place of seeking professional medical advice.

    Other than that Enjoy yourself, it's later than you think

  • Thank you!

  • When I first heard Parkinson's was likely, I burst into tears. I felt like I was speeding downhill, picking up gruesome symptoms on the way.

    Then I got onto this group and met terrific people who had been living with PD for 10, 15 years and more, and were living active, meaningful lives.

    Then I thought, if I can't do what I used to do (I'd been a reporter) I'd do something else. I went back to school to get an MFA in creative writing. Nobody cared if my hand shook or I was sometimes unsteady on my feet. I've been meeting friendly, interesting people and exploring a whole new field.

    Then a lovely lady you were just chatting with who turned me onto Rock Steady Boxing. and that brought a new dimension to my PD journey.

    So if at first I was stunned and terrified, I've relaxed considerably and live a full life. I have bugaboos with various meds and other kinks that need to be straightened out -- it's always something! -- but that's where this group comes in! They have ideas, suggestions, personal stories to share and plenty of smarts.

    I'm glad you'll be dumping your "old" doc with a bang!

  • Wow such a nice response! Thank you. Yes I need a new dr. that one was a buffoon.

  • hi my husband has had pd for 2 years now and when he got told it was the same ,the shock was horrible to us both and the family.we had to have some one to talk to.then when we realised life goes on you are not going to die we got on with dayly living and he has to take lots of tablet every day.dont give up you will be fine ,and come out the other side.

  • This 5-page summary of PD, which includes natural alternatives to the typical allopathic options, is a great starting point for the newly diagnosed:

    lifeextension.com/protocols...

  • Hi dmariel. I don't want to give the impression that doctors do not know what they are doing, but we have to understand that our knowledge about Pd is increasing by the day and their knowledge is based on what they learned in medical school. I am sure that they try to keep up with all the developments in how the brain works but that does not always translate into the way they deal with Pd.

    I am in the unfortunate position to have been able to reverse some of my Parkinson's movement symptoms, which they have been taught is not possible. So many of them therefore say that I do not have Pd because there is nothing you can do to slow down or stop the progression of Pd. I have been examined by 4 top Neurologists, who all agree that I do have Pd, but that does not stop those doctors, who have not examined me, from saying that I do not have Pd.

    Dr Norman Doidge came to see me in South Africa and he spoke to 3 of my neurologists and my GP and satisfied himself that I really do have Pd. I then took him all over South Africa to meet many of the Pd patients that I have also been able to help reverse some of their Pd symptoms. He wrote his last book titled, "The Brain's Way of Healing", which was published in 2015 and in chapter 2 of that book he wrote a story about my experience.

    Pd affects many, if not all, of the movements we make without having to think about what we are doing. We don't have to think about what our legs and arms are doing, when we are walking. We don't have to think about how we write, when we write, we only have to think about what we write. We don't have to think about bringing food to our mouths when we eat, it all happens automatically.

    Now with Pd, those movements don't necessarily work properly. With some patients, they don't have walking, writing or eating problems, but they have other symptoms.

    I have been able to overcome all of those problems and many others, but if I don't concentrate on what I am doing they revert back to not working properly.

    If you want to do what I do, it costs nothing. I have not needed to take any Pd medication for over 14 years now and have not needed to visit my neurologist during that same period either.

    Go to my website - reverseparkinsons.net for more information.

  • I was diagnosed in 2009 aged 58 female

    My first 5 yrs were so lonely

    I had no support at home & no help from Neurologists

    Thanks goodness I had a wonderful big picture GP

    I Do a lot of research & reading

    I have just finished reading "Brain Storms"

    It has had a profound effect on me one Of the statements "Parkinsons is not a death sentence It's a life sentence" especially effected me now I'm responsible for my PD life journey

    I have been 100% Gluten Free for 12 months

    My results from GF diet has been wonderful I no longer have an essential Tremour my arms do not shake my eyes do not water my drooling is reduced & now only at nite

    I have started on a new exercise program Parkie Boxing & beach walkihg every morning (5-8 kilometres per day)

    Good luck with your PD journey & extra good luck in finding a Neurologists

    Welcome from all of us

  • Max, I feel so sad reading that you were so lonely for so long.

    Who knew gluten would have an impact on PD?? I'd like to learn more about that.

  • Kassie not Max

    There are clinical trials in progress on using GF Diet to help PD pts

    I originally was only going to give GF 3 months trial

    But I have embraced it & i am now GF for life

  • Hi maxkas I was just thumbing through the posts when I noticed you mentioned your eyes watering.

    I was diagnosed in 2013 aged 48 and I am on Sinemet mostly with amantadine and venlefaxin and vit d400

    Lately my eyes have been watering a lot especially at night I never knew this was a pd side effect, thought it was just me I am now going to dig further .

    Regards and good luck Henry.

  • I got the watery eyes more before i started sinemet. I get a really oily face, forehead and nose. I have heart that this too is a symptom.

  • Hi, sounds like you have it together. I am going to join a gym. Thank you for the nice note

  • Hey, hello from Holland MI. try to calm down. I am 69 and was diagnosed in 2003 when I was 56. the disease will change your life but ìt doesn't necessarily mean tragedy. face it with a positive attitude and that will help you battle the pd much better. find a dr more sympathetic to your situation and get started on your meds ASAP because you're going to have to try out several to find one that suits you

    I have lived with this diseas for a long time and I stI'll lead a full and reasonably happy life. I walk every day with my dogs and do my exercises often

    what are your symptoms? mine are mostly balance and walking. no significant tremors.

    more later. gotta run

  • Welcome to the family. PWP. People With Purpose.! DX three years ago at 66. Continued to work for another year. My greatest fear has been that I live alone. Blessed to live in Sacramento where there are MANY support groups which I attend. I do yoga ride a recumbent bike and walk my spoiled dog. My neurological is at Kaiser and a movement disorder specialist of some renown. Yes it will take time to adjust. Not everyone will understand. I'm learning to be good to myself. Be patient. Take one day at a time! And for me the most important thing is prayer. This is the best blog for love support and great ideas.Praying for you😉

  • My neuro is also a man of few words but Okay underneath I think. He thought it necessary to say in the letter to the GP "Mrs,P was very shocked...." Really!! Who would have thought

  • My husband was misdiagnosised and treated for dementia for 4 or 5 yrs. He did have the symptoms and tested badly on a neuro-psy test. In therapy a few years later she said she suspected PD! They then put him on PD meds also. This past year neuro did Tests which showed no Alz so now its just PD. They show up in different areas of the brain. Unfortunately its is diag by symptoms. He is just now getting some hand trembling. He does not swing his arms much, speaks very slowly and quietly, cant taste or smell very well. Hes depressed and has no enery or motivation. You need a good neurologist and a movement specialist when the time comes. Read all you can. The internet has a wealth of info. See if your town has a support group so you can share experiences and ideas. Exercise and lean on those that love you.

  • Something I just thought of for those of you that can't get out & about are 2 DVD's by David Zid, one is Delay the Disease and Functional Fitness. David has been to Rock Steady and has also given demonstrations at the annual PD symposium in Indianapolis. He is a very energetic trainer and knows his stuff. You can find them on Amazon.

  • I love this site. Everyone has so much to share. It is a real bummer when the Neuro DX you, then has little or nor more information for you. The collective wisdom, on this site, is much broader than any Dr can know..

  • you have a family of supporters now ... we will listen !

  • sounds a lot like when I was diagnosed back 2016. I just had to go home and do all the research myself. good thing you came to this site. you can receive a lot of help here with questions, reading about the experiences of others and finding out about resources. there are support groups that you can go to that very helpful getting to know other people with Parkinson's and exercising together talking with each other. Please submit your situations and questions as they come up. you'll get a lot of helpful input .

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